Diagnosis and (hopefully) Murder!

On Wednesday we headed up to Papworth. Jas felt the mycophenolate was probably the root cause of Will's problems. So, he told Will to stop taking it for 10 days, and to increase his prednisolone dose to 20mg per day (he is normally on 5mg) to give him more protection against rejection. He also stopped a couple of other things that are known to cause nausea or diarrhoea. He let Will come home, ostensibly because he'd be more comfortable at home, but really because there weren't any beds.

At 7 that evening the GP rang to say that he'd got another stool sample result back - it had cultured campylobacter. Campylobacter + compromised immune function = antibiotics. GP prescribed azithromycin, which Will happened to have a store of from pre-tx days, so he could start immediately. Being the anxious folk we are, we rang Papworth and spoke to the transplant doc on call (it was lovely Irish David, who was v nice to Will after his op when his heart was doing weird things) to confirm that they'd be happy with that.

And 36 hours later, Will seems to have turned a corner. He woke me up at 4 this morning to tell me he was desperate for a McBreakfast. I'm still laughing because Will is now showing all the signs that he's surfing a massive prednisolone wave. For those of you less familiar with the power (for good and evil) of these tiny white pills, they are renouned for causing insomina, ravenous apetite, euphoria and impulsive behaviour. The full story of Will's night made me laugh even more - apparently when he got up at 4am he joined the Cambridge Table Tennis Club... Yep really. He's also suddenly got a list of things he 'needs' to buy, top of the list being ... you guessed it ... a table tennis bat. He left the house at 7.30 this morning to get his much desired McBreakfast, and texted me shortly after to say it was delicious. He's on his way to Papworth now for more bloods to check electrolytes and kidney function.

So please all keep everything crossed that the antibiotics are doing their thing and the mean little campylobacter squiggles are wriggling in their death throes. Am feeling a bit vindicated by the stool sample result because I felt from the start that this bug was presenting in a completely different way to previous viral bouts he's had. But bacterial causes are very rare in this country, so I get why everyone assumed it was viral.

In other news, the table tennis elements of the last few hours aren't entirely random, they are on Will's mind because he's signing up to take part in the UK Transplant Games in August! We are off to Bath for a long weekend to live it up with sporty transplantees! Think I'm more excited than Will, but then I don't have to do anything, I just get to wear a t-shirt and cheer/cry a bit.

Poor Will...

Apologies for venting rather a lot in my last post. What I didn't really say was that poor Will is suffering quite a lot with this bug. I think things are getting better, but MAN is the progress gradual. We have graduated from peppermint oil capsules for gut cramps (yes, I was sensing a whiff of sandals and patchouli too, but apparently there is good control trial evidence that these help) to codeine for cramps and to slow down the gut (made Will's mind go crazy, he was trying to poo out Dorothies in threes - shouldn't have let him watch the Over the Rainbow final on Saturday) and now we're trying immodium. We have to be very careful with this as the CF gut is prone to blockages. The worry now is that one of Will's immunosuppressants - the mycophenolate - may be contributing to the diarrhoea. You're not supposed to take it on an empty stomach and, although we're trying to get food into Will at the same time as taking it, it's probably not really enough. He certainly seems to feel worse after taking his hefty pill dose in the morning. We're also trying to get enough liquid and electrolytes into him, but dioralyte really is foul stuff and doesn't help the nausea.

Anyway, apparently Jas is now keen to see Will, but they are "chocka" at Papworth at the moment. So looks like we'll head to clinic on Thursday for a probable admission. I guess this would be to take him off the mycophenolate for a while in controlled conditions. I'm now slightly panicking - being told the consultant wants to see Will but can't cos there aren't any beds freaks me out rather. But rationally I guess they'd find a bed if it really was an emergency.

So, we plod (and poo) on. Can everyone send Will some healing and constipating vibes please...

Sunny Saturday ... in A&E...

Hi folks, Vicky here. Yes, today we chose to celebrate the hottest day of the year by visiting Addenbrooke's Accident & Emergency department. Again. Will went down with another gastric bug on Wednesday. It didn't seem too bad to start with but turned out to be something of a grower. Still, we knew the deal this time, right? Stool sample on Thursday through the GP, a load of bloods on Friday, and by this morning things finally seemed to be improving a little. Then we got a call from our GP (on a Saturday - respect), who'd got some results back showing that Will's sodium levels were low. He recommended that we follow this up.

So, we call the out-of-hours folk and the doc says we could go to the hospital or we could stay at home and hope things improve. Um, thanks for that! Of course, Will says that he'll stay at home and hope he gets better. The stay at home option involves taking a hefty dose of codeine to slow down the bowel. This makes Will feel weird and dizzy and makes me feel just plain nervous. I go on a trek for dioralyte and marvel at the heaving crowds of exposed flesh - come on people, just cos it's sunny, it doesn't mean you suddenly look good in a boob tube... (or am I just mean spirited and jaded these days??)

So then it's three o'clock and Will's still in pain and struggling to keep stuff down and most of all I want to avoid A&E on the Saturday night after the first hot day of the year when many people will have been having just TOO MUCH FUN. (Yep, jaded, that's definitely what I am.) I talk things through with Will's sister (handily a GP - poor Ellie having to deal with my anxiety) and she feels we should go and get Will checked out in case the sodium has fallen lower. HOORAY - a decision.

We pack, we go, we're there in 10 minutes. I drop Will off at the door and park, I go in and within LITERALLY five minutes we are whisked away from a waiting room full of DIY- and outdoor-play-equipment-related minor injuries and are in a single room and someone has put a cannula in. Apparently, when it's sunny, they get up to 20 trampoline related injuries per day. Within an hour we've see a junior doc and within 2 we've seen the registrar. They pack in myriad tests (bloods x2, chest x-ray, urine, ECG) and decide that it's ok for Will to go home. YAY! His sodium is slightly higher than yesterday and they trust us to keep him hydrated and to come back if he doesn't continue to improve. The whole thing has taken less than four hours which, frankly, I think is pretty good, given that the doctors were fantastically thorough and engaged. The registrar remembered us from last time(!), the junior doc went through the discharge letter with us in detail, explaining what all the test results meant, plus everything was spotlessly clean... sorry - am I gushing here??

So here's the first thing. I think the NHS is amazing. I love it. The NHS provided world-class CF care for Will at Papworth, it paid for Will to get new lungs and it looks after his new lungs as if they were its own. We can rock up at A&E and be treated without anyone ever asking us if we have insurance. I know some people have less good experiences, and I know we are lucky to have both Papworth and Addenbrooke's on our doorstep, but I can't really get over how lucky we are not to have to worry about the cost of treatment on top of all the other things we worry about.

But here's the second thing. I still absolutely hate Will getting sick and I hate having to take him to the hospital. It's still frightening and stressful. My anxiety levels are generally better than they were, and I really didn't panic too much this time, but I still hate all the testing. Who knows what joyous new weirdness they may pick up. A little abnormal heart tracing sir? Would madam like the low blood pressure today or the high? Which obscure little abnormal measure tickles your fancy? And it's still four hours spent in a tiny room with no windows, waiting for people to come and ask the same questions again or for people who say "I'll be back to do that in just two seconds" but don't appear again for an hour. Four hours that I, in all honesty, am tempted to resent not having spent out in the sun having too much fun, cos then I could be in A&E right now, pink as a lobster and drunk as a skunk.

Loads of love to you all, especially to Jim Fahr in the US who got his new lungs on Wednesday, and to his wife Denise. Jim's been having his own gastric issues following his operation but hopefully both he and Will are now on the mend.

clinic update

Had clinic on Thursday and my lung function numbers confirmed something odd that happened between Monday and Tuesday earlier this week - I somehow discovered an extra 300ml of vital capacity, and a bit more FEV1. This has happened a couple of times since the transplant, and each time it's been preceeded by a creaking feeling between my lungs and the chest wall, as if I am muscularly learning to yank out an extra bit of chest a bit further. After the creaking stops, the lung function goes up step-wise.

So my numbers are now just over 100% predicted for FVC, and around 90% for FEV1. Pretty happy with that!

the experience continues

It is 2am. I am lying on my back in the anaesthetics room, wearing my operative gown. There are five or six people in the room including two anesthetists and a few nurses. They say they are going to put an arterial line into my arm. I'm fairly relaxed - the mild sedation is keeping me so - but I remember the many arterial blood gas tests I've had over the last few years and know I am in for some pain. It is much harder to access an artery than a vein - when the artery is stabbed it collapses, then gradually relaxes, so the needle has to be held in place for a while until it opens up and the line can be inserted. Also, the artery is deeper in the arm than the veins, so there is some digging to be done...

Ann is still with me, and asking me questions about family and where people are. While we chat the anesthetist who came to see me in the ward has a go at the arterial line, near my left wrist. It is painful and unsuccessful, after quite a while prodding around inside my arm to try and find the artery. He has another go, a bit higher up my arm - again he can't get the line in. It's a bit of a mess now. "Having a bit of trouble?" I say, cheerily. I realise this is probably not helpful. He calls over his colleague, who I feel is probably his superior, and he finally gets the line in about half way between my left wrist and elbow on the inside of my arm.

The last thing I remember is telling Ann that Vicky's dad is in South Africa on holiday, and then everything is gone...

...I am conscious. I hear words: "you've had a transplant".
"oh, ok. I must be alive. I must have made it. This is going to be unpleasant...I guess I am intubated..." and as my senses begin to kick in, I search around for the sensation "yep, there it is, tube in my mouth. Just breathe"...

...I fight the ventilator. I try and breathe at my own rhythm. I'm choking. "Breathe with the machine" says a voice. I try to relax, to breathe in when it pushes in the air. I get the hang of it...

...There are people in the room. I can hear Vicky and Ellie. I try to open my eyes and there they all are standing at the foot of my bed. My eyelids are leaden, and I can't hold them open for long - against my best effort they close again...

...I open my eyes again. Mum and Dad are there too. As I open my eyes people react - they smile, they point, they go "ooo!". I find this hilarious, and try it a few more times to get the same response...

...I am still finding it hard to breathe with the ventilator. They say they will take the tube out. They pull it out and replace it with oxygen through a mask - it is loud and high flow. "breathe, breathe" I think. I struggle. "Relax"...

...I am awake. I can take stock of my surroundings, in the weird half light of intensive care. There are no windows, except one on the opposite wall of the single room to me, but it only looks out onto the rest of the ward. As I gradually become more and more aware I notice all the tubes, all the machines around me, I notice the catheter for urine. I notice the chest drains - four fat tubes coming out of my chest wall, draining light red fluid into pots on the floor. I notice the nurses, who change every eight hours or so. One in particular is very kind. They take blood out of one of my tubes every hour and instantly run off results of levels, then tweak various infusion pumps to keep me stable.

I start to notice pain. The nurses need to clean me, and this means moving onto my side so they can scrub my back and bottom. The effort required to do this and the pain are extraordinary.

Time passes in a blur. I start to drink fluids. The oxygen is changed to a nose peg. I get some sleep.

A doctor comes in and advises about chest drains and when they might come out. People come with a portable X-ray machine - I have to sit up, which is agony.

After a couple of days Jas arrives and does a bronchoscopy to have a look around and hoover out some sputum. I am encouraged to cough and bring up the sputum - they give me a rolled-up towel and tell me to squeeze it to my chest as I cough - it feels like my sternum is tearing open with each cough, it brings me to tears.

I get out of bed and into a chair. I have so much pain it is close to unbearable. I want to get back into the bed but the nurse can not move me on her own, and can not get help. It is the worst day so far. Eventually I get back into bed and an epidural is arranged. Having the epidural I sit on the edge of the bed and lean forward, the nice nurse comforting me as the anaesthetist takes three attempts to get the epidural in the right place. Eventually it is done and the pain is relieved. They check the numbness by rubbing ice on my chest and asking me if I can feel it.

A bed comes free in the ward and, a day later than originally planned, I am wheeled through with all my tubes and machines. On the ward the noises of all the other machines filter into my dreams and my mind creates hugely complex compositions around the rhythms of the ward. I think that I wish I could somehow record the music, write it down - I had no idea my brain could come up with this stuff. I have gory dreams of tubes, gristle and blood, I see ants and cockroaches crawling around a scene of viscera. I have trouble sleeping.

Gradually life becomes more normal and less dreamlike. My drains are taken out, two at first, and then the other two. The catheter is taken out, which hurts like hell. All of these are done with gas and air, and I get to quite like the old nitrous. I make my first blog post, at 19:26 on Monday 26th October 2009, three days after the operation. The rest is history

Postscript: Sorry about the delay to part 2 of the transplant experience. We have been away on a lovely holiday on Exmoor, with some good walks up and down hills and along cliff paths, plus plenty of cream teas!